7 of the Ways my Dad improved my life

As usual, I have only a limited amount of time to write this blog. Today I have been particularly mindful of the many myriad of ways that through his illness and final years, my father had an incredible influence on my life.  

I have been really struggling since his death and needed to write this list in order to begin a journey of regrouping my strengths. At the moment I'm suffering a loss that belies the frail old man who was dependent on others.  These are seven of the reasons why my loss is so great, just some of the ways he improved my life:

1. Gratitude - witnessing Dad living in a nursing home, reliant on the courtesy (or lack of it) from other people, relying on their gentleness (or lack thereof), and dependent on them wholly due to his dementia in ways that we can only be horrified at was exhausting emotionally. In order to cope with the sadness of bearing witness to the circumstances it was absolutely necessary to become grateful. Grateful every day that I could help him, give him dignity or something to look forward to; grateful for every day that a 'good' carer was on that he was receiving better treatment that day; grateful that the 'bad' staff were only on for a shift and then would be gone again. Gratitude improves longevity, so learning the lesson of daily gratitude through Dad was incredible.   

2. Acceptance - As Dad declined in health both mentally and physically, he never ever lost his will to live or his enjoyment of what life he had left in him.  As each new indignity of ageing took over his daily life, he accepted it with grace (mostly) and continued to turn instead towards that which made him happy. He lived for his grandchildren's visits, for my visits, to see the sunshine and flowers, and to kiss the hand of his caring staff. He lived for sausages, and other enjoyed foods, and for the smile of a warm person. He taught me that life is about flowers and family and if you can't have either, just find something and enjoy whatever you can. Bless him for that incredible lifelong lesson I hope to pass along to my children.

3. Strength of mind - nothing creates a need for strength of mind like having to find a way to overcome the gulf between wishing to provide total assistance and dignified care to your loved one, and the reality of there being very little you can actually control.  Dad's situation taught me to create my own boundaries around my expectations and actions. He taught me that if I could only help him once a week, that was better than not helping.  Acceptance is a key part of having the strength of mind to decisively think positive instead of despairing, I had to learn to accept that what I did had to be enough simply by telling myself that it was.

4. Boundaries - When someone is in a nursing home or hospital, they are in 'their' world, swallowed up within the systems and rules created by those large institutions.  Learning to navigate the systems first step was to follow the unwritten rules and boundaries. I now know how to look for these in so many areas of life.

5. Communication - Dad's illness taught me so much about humanity. How to get onto his level and communicate with him, as well as how to negotiate and advocate for him. I had plenty of help from some of the kind people in the system, but without Dad I would never have persevered with learning so much about communication, how to find one key point and focus on that, how to not bombard people with everything you want to say, so many things.

6. Patience - waiting for a doctor for 3 hours is a very effective way to build up a head of steam, however it doesn't help anything. Likewise if a nurse isn't coming to a buzzer call fast enough. It helps to simply apply patience to them and get on with something else while you wait.  In the case of more than one buzzer call I simply got on with fixing the problem as best I could myself, knowing they'd turn up eventually. 

7. Determination - of the quiet kind.  Dad simply didn't give up on walking, regardless of who gave up on him. If people unthinkingly were stupid enough to place him in a position from where walking proved impossible, he would simply get around by any other means he could muster, most of which were so ingenious that carers simply didn't believe his determination or intention. Many people under estimated my father, sadly to his detriment, however the determination he showed, right up until the end of his days will stay with me forever.  

Thank you Dad for all you did for me, perhaps without knowing it. I believe though that you did know, and I hope you know how grateful I am for your amazing gifts. Without a father like you, determined and unwavering in your last years I would be poorer for the lack of experience.  Love you Dad. 

An open letter to the medical team treating my father

Dear Doctors

I wish to explain to you my position on my father's treatment while in hospital (and out of hospital for that matter).

Last night, Dad held out his arm, covered in little white dots from blood tests, and made some noises that sounded like he was trying to get a sentence out. I asked him to repeat himself. I couldn't believe what I heard! "Did you just say to me "I've got bad veins"?" I asked him.  He grinned at me with a twinkle in his eye!  Dad was making a joke about his situation, less than 24 hours after waking up from an unconscious state that had lasted 8 days.

My father has dementia. I don't care what 'category' of severity that you wish to classify it as, because your classifications mean nothing to my father, or to us, his family. What means something to us is that he contributes to our life in a positive way, despite the obvious challenges he presents in extra responsibilities. 

Even now, Dad is contributing to the world. In the last week he is teaching me - to never ever give up; to defy those in authority or who think they know better than you what you know to be your own truth. He has taught me during the past two years that there is ALWAYS something to appreciate.  He has inspired his nephew in Melbourne through his tenacity and determination.

My children when faced with his potential death, remember him still as the Grandad who loves them unconditionally, without judgement, and who continued to play with them, even as recently as playing ball early this year.

It is important to remember that he has had many opportunities to leave us through sickness and he chooses not to do so, coming back from the brink through sheer willpower alone.

I have had time to reflect on your suggestion that my father ought to not be treated for any new infections.  I contest that you are mistaken in this assertion.  Australia is a first world country. One of the markers of the wealth of this nation is that we are able to provide health care for our sick, ailing and elderly.  All of them. There should be no judgmental decisions made based on Dad's disease or what your own morality insists about who is worthy. The morality that is relevant here is that of Dad, and of us, his family.  You may be a doctor, but you are not my family's moral compass, nor is that your role. The truth is, that in a poorer country, with limited health resources, a decision about who is most deserving would be relevant, however we are not in that situation. If there is a fiscal problem with supply of medicine on the Sunshine Coast in 2014 then it is politicians we need to pressure, not the family of an elderly man who is determined to live.

Perhaps Dad can provide an important lesson to your young student doctors about the dangers of making assumptions about someone else's quality of life. As an elderly friend pointed out to me last night, there are fit young people in the world with better physical and mental abilities than Dad whose quality of life would be considered poorly, yet those people are not judged when being considered for treatment.  Why should you make this judgement when we are supposed to be a wealthy country?

So it is with delight at the tenacity of a single human being with great lessons still to impart to his family, that I request that you don't just pay lip service to the concept of treatment for my Dad, but you give him the full benefit of medical assistance, including fully discussing with us his necessary nutritional requirements, not just glucose which is making a pretense at assistance, but fully and openly discuss the path to improving Dad's health.  Let's leave the 'will he or won't he survive?' discussion aside, and give him the opportunity to make that decision for himself, with the best possible care from your team to support him.